Electric EDGE
Web Edition of The Ragged Edge
January/February 1997

This past autumn,
Paul Longmore, a
professor of
history at San
Francisco State
University
and longtime
disability rights
scholar and writer,
spearheaded an
on-line effort
to amass
signatures
for an
advertisement to
run in the nation's
major newspapers
protesting
Kevorkian. In a
message that
originally appeared
on-line, Longmore
explains why he
got involved:

Paul Longmore:

According to the definitions of "terminal illness" used in the model statutes proposed by right-to-die advocates and applied in several court rulings upholding that "right," I am terminally ill, and I have been for the past forty-three years.

I have a physical disability. As a result of childhood polio, my arms are
paralyzed, my spine is curved, and I use a ventilator as much as eighteen
hours a day. I am experiencing the late effects of polio common in many of us
who contracted the disease. I get fatigued much sooner than I used to and have
much greater chronic pain.

I employ aides to work in my home to do housekeeping, cooking and shopping and
to assist me with personal needs. The university pays for typists to
transcribe my research notes from audiotapes and for student assistants to
fetch books from the library, to help me organize teaching materials, and to
do filing in my office.

I am an Associate Professor of History at San Francisco State University,
where I specialize in Early American History and the History of the Disability
Minorities in America. I have written both academic and popular articles about
the history of people with disabilities, cultural representations of
disability in motion pictures and television, our current civil-rights
struggle, and assisted suicide as it affects disabled people. I have been
involved in disability-rights activism since 1977 and in disability studies
since 1983. The latter is an effort to make "disability" a subject of serious
scholarly research and teaching based upon a new minority-group or
sociopolitical perspective rather than the medical model.

Yet for most of my adult life, I was a prisoner of public social-welfare
policies. Those policies did enable me to live independently. If I had resided
in most states other than California, I would have been forced into a nursing
home. But those same policies also blocked my efforts to pursue a career as a
historian and college teacher. Provisions euphemistically labeled as "work
disincentives" actually threatened to punish me if I got a job and earned an
income. Productive paid work would have disqualified me from federal Medicaid,
the health insurance that pays for my ventilator (around $12,000 a year), and
from California's In-Home Support Services program, that pays for my domestic
aides ($15,000 a year). Yet I knew I could not earn enough in an academic job
to cover those expenses. Nor would private insurers cover most of it.

I was liberated from the thrall of that "crippling" system by the successful
lobbying of disability-rights activists. Over the objections of the Social
Security Administration, they persuaded Congress in 1988 to eliminate some of
the most restrictive work penalties.

At last in 1990 at the age of 44, I was able to secure my first full-time
teaching job, a visiting professorship in the History Department at Stanford
University. Two years later I was hired by San Francisco State University as
their specialist in American Colonial History. And three years after that, I
was granted tenure and promotion to Associate Professor.

I tell you all this not to brag about my accomplishments but to make the point
that the only reason I got this far was because of the achievements of the
disability-rights movement. No matter how hard I worked, I could not have
succeeded without the removal of work penalties through the activism of our
community.

Nor do I tell you all of this to boast about my tenacity and perseverance.
That is the sort of individualistic claptrap usually fed to disabled people.
It keeps us believing that if our lives are limited, it is the because of our
disabilities or our lack of pluck. The fact is that in 1989, one year before I
went to teach at Stanford, I descended into an emotional blackhole. I
despaired of ever achieving my dreams. I gave up on the whole idea of becoming
a teacher.

Two events in the summer of 1989 drove me into that despair, the death of
David Rivlin, which I reported on in the statement you received, and the legal
bid for doctor-assisted suicide by another disabled man, Larry McAfee of
Georgia. Like Rivlin, McAfee was a ventilator-using, spinal-cord injured
quadriplegic. And like Rivlin, he was forced into a series of nursing homes --
and even spent eight months in the intensive-care unit of an Atlanta hospital
-- because the State of Georgia refused to fund independent living at all. He
told Joe Shapiro of U.S. News and World Report that the worst thing about his
disabillity was that people treated him as though he was "invisible." He told
ABC's Nightline: "If you're a citizen or resident of Georgia and you become
ventilator-dependent, you'd better be prepared to become an outcast unwanted
by the state." His mother said that he was "thrown around like a bag of
rotten potatoes that nobody even wants." "You're looked upon as a second-rate
citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't
deserve to be here. You should hurry up and leave.'" "It gets to the point,"
he said, "where you realize that this is your life, . . . and in my case, it's
not worth pursuing."

But McAfee's attorney asserted that "he's made a rational decision that he
just doesn't want to exist this way," as a quadriplegic. Judge Edward Johnson,
ruling in favor of McAfee's request for doctor-assisted suicide, expressed
admiration for his "courage." Dr. John D. Banja, assistant professor of
rehabiltation medicine and lecturer in medical ethics at Emory University
School of Medicine, declared to the court: "We acknowledge an individual's
right to autonomy, self-determination and liberty as part of our ethical
vision in this country."

This is the sort of "autonomy, self-determination and liberty" society
willingly accords people with disabilities: the freedom to choose death. And
then it applauds our "courage" and "rationality," all the while ignoring how
society itself has battered us and made our lives unbearable.

Four Atlanta disability rights groups, led by Mark Johnson and Eleanor Smith,
issued a press statement condemning Georgia's Attorney General and others who
supported McAfee's petition for assisted suicide. They declared themselves
"outraged that our state for years left Larry McAfee without enough support
for independent living and now steps in willingly to help with his
suicide....The state creates an unbearable quality of life and then steps in
and says disabled people should be assisted to die because their quality of
life is so poor."

Fortunately, Larry McAfee changed his mind about dying because people from
United Cerebral Palsy offered him creative possibilities to regain control of
his life and to work in computer engineering. In the end, he testified before
the Georgia state legislature, calling upon them to fund independent living.

But that came months later. In the summer of 1989, Larry McAfee won court and
public approval for his bid to die and David Rivlin was assisted to die.

And it hit me that I could easily have been in their place. At that point, I
was still being denied the right to work, and I would have been denied the
right to self-determined independent living if I had lived in Georgia or
Michigan. I could very well have found my life unendurable. I could have been
the one to say, "I would rather be dead." And many people, many civil-
liberties lawyers and compassionate judges and humane doctors, would willingly
have helped me die. They would have lamented how hard my life had been because
of my disability. They would have admired my "courage" in "choosing" death.
And they would have congratulated themselves for upholding the "ethical vision
in this country" that individuals have a "right to autonomy,
self-determination and liberty."

One thing saved me from that fate: the disability-rights movement. Our
movement won my right to live independently, to work productively, to gain
access to public places, to receive reasonable accommodations, and to obtain
protection from discrimination. Our movement gave me the gift of a nurturing
community. It offered me a positive, disability-affirming identity. It taught
me pride.

Assisted suicide: ADA violation?

Not long ago, New Mobility magazine reported this
missed-by-the-world-at-large tidbit:

"Disability activists used an ADA-based argument a few years back to
temporarily block Oregon's Ballot Measure 16," which would have legalized
assisted suicide. According to the report, a brief filed by Carol J. Gill "an
Illinois psychologist and disability-rights advocate" made the point that the
"death with dignity" proposition would discriminate against disabled people
who might be ignorant of services that could help them live."

Gill's argument: when a person who has a non-curable disability says he or she
wants to die, that wish is looked on differently . . . "than if the suicidal
wish is made by a nondisabled person. This different treatment of disabled
people" as a result of Measure 16 would, she claimed, violate the Americans
with Disabilities Act and its prohibitions against disparate treatment.

Deadly statistics

"Suicide is the leading cause of death for people with complete paraplegia,"
reports the September, 1996 issue of Paraplegia News. "The
confirmed suicide rate for people with spinal cord injuries" is nearly
5 times higher than the general population.

"If the suicide rate for the general population equaled that" of these
disabled people, it reported, there'd be 2 suicides every 7 minutes.

The greatest risk for suicide is not immediately after the injury, as might be
expected, says the magazine. The greatest risk occurs from one to 5 years
after becoming paralyzed. "A possible explanation is that family, friends and
hospital staff give people who are newly injured a great deal of attention and
keep patients extremely busy during the rehabilitation process." Danger occurs
when the support system dwindles or disappears altogether.